The dreaded 7 letter word

We had to take Mattie back to the eye doctor last Tuesday. I had noticed that she was losing focus and her left eye was turning outward on occasion. Dr G assured me that her eyes looked fine and the outward turn would improve as her eyes adjusted to the new position and got stronger. Then… the seven letter word that was about to turn our life upside down was said…seizure. As soon as Dr. G said it, I knew instantly. It was like my mind started to replay the past 5 days and what I thought were periods of “not focusing” very well could be seizures. I was shocked, although I am not sure why. We knew there was always a chance Mattie would get seizures. It is very common in kids with CP, 45-65%. Although I knew we were not out of the woods by any means, I had pushed that word completely out of my mind.

As soon as I left the office, my first call was to Jim. Could it have been this past surgery? Did they use a different anesthesia? Was she under for too long? Did she have a bad reaction to a medicine that was given to her? Why now? We started her on a mineral supplement 3 weeks prior to surgery, could that have been it? A million questions raced through my mind. I called Mattie’s neurologist and we scheduled an EEG the next morning.

I went back to work and was numb the rest of the day. That night I finally got the chance to “Dr. Google” and I finally broke down. I felt like someone punched me in the stomach. Seizures. Epilepsy. Are you kidding?? I was devastated. Can’t she ever just catch a break? I can’t even wrap my mind around what this means. I try to remember what gets brought up on the CP boards I follow, ER, meds not working, meds making the kid crazy, lack of attention, cognitive development slows…crap.

The office EEG came back normal. Later that day Mattie had another staring spell. The next step was to do a 24 hour EEG. The neuro scheduled it for Friday. We would have to spend the night at the Children’s Hospital. Mattie did fairly well, considering we were stuck in a room and I could not put her on the ground to roll around (which is where she spends the majority of her time) and she had 30 electrodes glued to her head. I on the other hand could not sleep and by the time Mattie woke up, I was a mess. The entire time I never saw a staring spell or seizure. Now it had been going on 3 days of not having one.


Get this off me!


Dr. G finally came to talk to me around 11:30 Saturday am. At this point, I was expecting a result of everything is fine so I was not really concerned that Jim wasn’t there. We didn’t catch anything so I did not even bother doing any more research. I really began to think that it was a coincidence and even thought to myself that our neuro was going to think I am some over-paranoid mom… but was I???

“Mattie is having abnormal brain activity while she is sleeping”

I was completely taken aback and felt unprepared for this. Apparently there is a chance that she will have a seizure while she is sleeping and what we have been noticing are most likely seizures, although she did not have any staring spells while we were being monitored. I hear the words seizure meds, epilepsy, right side of her brain, abnormal… and I kinda go in shut down mode. I am trying to remember what I should ask but Mattie is crying and everything is a mess…

As I sit here and try to finish what I want to say about this, all I feel is sadness. My heart hurts for her because all I want is for her to live the best life possible. I am so worried about these meds and how it will affect her. Mattie has really come so far the past few months that I feel putting her on a seizure med will be a step backward. I feel like we are so used to getting bad news that my emotions go from crying to survivor mode in a short amount of time. There is no time for crying and sadness. I have to be brave and strong for my little girl and figure out the next step.

When Jim and I were finally able to do some research, we decide another call to Mattie’s neuro was in order. We had a ton of questions that I was not prepared to ask at the time he gave me the news. We also agreed before starting any meds, we would get a 2nd opinion. We gave Mattie’s neuro a list of questions today and were told he would call us this evening.

Jim and Dr. G talked for awhile tonight. We expressed our concerns about starting her on meds, the side effects, and the fact she has not had any seizures in the past 5 days. The final outcome was holding off on giving any seizure meds at this point. We are to watch her closely and see if she has any more absence seizures. If she does then we will have to start the meds. I am relieved but am still left feeling unsettled with the sudden change of direction. It never stops, the analyzing and re-analyzing, but for tonight I have the answer I wanted and I will leave it at that… until tomorrow 🙂

We appreciate all the messages, good thoughts, and prayers (more than you know). We have an amazing support system and could not do this without you. Thank you from the bottom of our hearts.


Look at these eyes!!Cookies!

Noses and Glasses

We have had a busy June and July. August is looking pretty full as well. Traveling for ABM is really taking a chunk of our free time. Since the last update in June (First Steps), we have done 10 ABM sessions with another 5 more on the schedule for July!

Mattie is starting to have better balance, she is using her hands to balance herself, she has added Na-Na-Na to her vocabulary, she is eating table food (yea no more pureed-pain-in-the-ass-food), she can grab food and feed herself (although she misses ½ the time), she officially knows where her nose and belly are and best of all, she is reaching up to be held (heart melting) and gives us “noses” (eskimo kisses). Although she still can’t sit on her own, I was able to take her grocery shopping for the first time this week using an actual shopping cart!! This should not be a big deal for most people, but it was to me. A few SNM suggested that I use sugar bags or water to keep her from falling over, but I decided to wing it and just have her hold on (for dear life) and for the most part she did really well  (she only fell over twice!!).

As we continue with ABM, PT, and OT, we are finding that even though she is behind, she is making slow and steady progress. All of our time and effort is really paying off and that is what gives me motivation to continue this crazy hectic schedule.

We were officially released from Mattie’s GI doctor. Yea!!!! Another ‘ologist crossed off our list! Mattie is back on the growth charts and at her 15 month checkup last week she weighs a whopping 19 pounds 14 ounces! She is in the 40% for height and 25% for weight. We are back to every 3 months with her pedi!

We saw Mattie’s neurologist this month. He thinks she is making progress and has pushed our appts to every 6 months rather than every 3 months. He had nothing new to tell us and we had nothing new for him. He is old school and some of the alternative therapies we are doing with Mattie he has never heard of. I have been thinking about switching neurologists, but he is one of the best in our area. I am not sure that a new doctor would really shed any light on Mattie and her PVL since all kids are different, so that is why we have not made the switch or even gotten a 2nd opinion.

One area that I have gotten 3 options on is her eyes and vision. We saw Mattie’s eye doctor this month and let’s just say that we are no longer just “waiting”. As you know her eyes will occasionally turn in. This does not happen all the time and most people may not even notice, which is why we have been holding off on surgery. We started patching again. This time it is her left eye. Dr. W thinks that her right eye is now the weaker eye (we were patching her right to fix her left) and Dr. W wants Mattie in GLASSES!!! I knew this was coming. We went home and took out the lenses of her sunglasses to see how she would do with wearing glasses since we were advised that if she would not leave them on then we should wait on the glasses. She immediately takes them off. I can’t even get a picture of her wearing them! So… I just bought an eye glass strap in hopes that she cant rip them off. I am waiting for that to come in the mail before we give up on this eye-dea 😉

A 1st Birthday and A 3rd Opinion

Mattie’s birthday bash went fabulously! She enjoyed the icing 🙂 I wanted to take her in the pool for the first time, but the water was a little too chilly for her. We had around 50 people come to celebrate this amazing milestone! Thank you to all that came, sent messages, or gifts! It is always much appreciated!!

I posted a few pics on facebook. So go check out her Hope for Mattie page (and Like It)!

Our Preemie Display

Yummmmmmmmy Icing!

We had a 3rd opinion ophthalmologist appointment last week and on Monday I took her back to her original ophthalmologist. Here is a little background info:

We were referred by Mattie’s neurologist to go see Dr. W due to Mattie having crossed eyes (strabismus). I knew Mattie’s eyes were crossing but I thought it would just go away since sometimes babies eyes cross. So we went to see Dr. W when Mattie was 5 months old. Dr. W told us to start patching her right eye to help strengthen her left eye. We did this 3 times a week for 4 months and saw no noticeable difference. She does not have a “bad” case of eye crossing, but it does happen when she looks at things closely or gets tired.

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